She is always challenging everything, is very headstrong, and is trying to always to achieve what she wants. She’s going to try to find a way to get what she wants one way or another. She’s always trying to find a way to get what she needs to try to get her body moving. She tries to help herself, but she also tries to help others all the time. And she is very, very caring to other kids’ needs and situations if they’re disabled or not disabled. She seems to connect with people on an emotional level.
Mother
Making good friends
The school has been great. The teacher explained to the kids, “Charlie has problems and if he falls just leave him alone.” He has had some really good friends. They don’t tease him, and they wait for him and they say, “Charlie, you try it.” He will throw a ball and it won’t nearly be as far as the other kids, but they cheer him on and make him feel good.
Mother
The children see her for who she is
In first grade a child was describing Kayla to her mother, and she told her she was beautiful, had black hair, beautiful eyes, and the best smile in the world. She dressed up really cute. Her favorite color at the time was purple. So the mother at the time was like “Who’s this Kayla?” and started asking the girl questions, “Is she the girl that the one on one aide, works with?” and the girl said, “Yeah, she is.” She didn’t say anything about her wheelchair or that she was limited. She just talked about her as a person. So her mom had to come and tell me this, which is great because it made me feel so good that the children see Kayla for who she is.
Mother
Educating classmates
When she first started school, of course, a lot of kids had never seen a wheelchair, or maybe they had seen one on TV, but not in person or close up, and so I’d say on the first day some of them were a little intimidated. Some knew of her, so they looked past that. The aides, teachers and her home care nurses that go with her to school were able to show the children that it was just her chair, and that it went with her everywhere, that she wasn’t able to walk as they walk, that she had limitations, and that her body doesn’t function like theirs, but that she understands completely what they’re saying, even though she can’t say it herself. Everyone was consistent in that, so it was helpful that they were able to adapt to Kayla, in a sense, and that was my biggest fear, having her going to school in an atmosphere where people weren’t aware or familiar with people like her.
Mother
I have to be his strongest advocate
As a parent, I think I have to be his strongest advocate and I have to constantly monitor his progress in his work, above and beyond progress reports and report cards. I have to communicate weekly. I have a communication log book with all the staff and that’s been a great help. The communication log book is a way for the staff to communicate with the parent or the guardian about the child because when you have a child with special needs and that has an extensive education plan, the once a year or quarterly report card meetings are just not enough. You really need something in between. I just bought an inexpensive three ring binder with lined paper, with sections for each teacher or service provider–the primary special needs teacher, the homeroom teacher, and then his occupational, physical and speech therapists. I write to them each week and then they write back. It can be any questions or concerns they have–“Brian had a bad week,” “He didn’t socialize with the other kids on the playground,” or it can be an academic issue. It’s just a lot of back and forth, but it’s always good because it provides information for both sides.
Mother
I think one of the things that have helped Katie succeed is her father and I have kept the bar high. She’s in public school. She may not be doing all the classes that they do in public school, but we try to pick one or two. Do it and do it well. You can’t do well at everything. So pick the strengths and work on those strengths because I think half the battle is empowering your child. You know, keeping their confidence level where you want it because then they think they can do everything. Then that makes them happy.
Mother
The Best Buddies Program
She is involved in a really cool program called The Best Buddies Program. I’m just learning about it now, but it matches up a peer, a high school student, with a kid with some type of different ability. They check in once a week by phone and we put the speaker phone on and this girl talks to Katie and tell her what’s going on over the next couple weeks. They’ve been to the movies together, they’ve been apple picking; they’ve been over the house a few times. We had a little Halloween party here. So it keeps her in the high school community because sometimes I think we get stuck in the special ed community. And you’ve got to figure out a way to have a little bit of both because you can get really tired of talking about the things that your child can’t do. I think you really need to focus on what can they do. What have they taught someone today? What have they learned today?
Mother
Holding an assembly with the class
When bullying came up at school, the staff was very up front about dealing with it. They talked to Stephanie about it and she chose to have an assembly with the rest of her class so she could talk about her CP and answer questions from the students. It was really amazing and I never heard of her being teased again.
Father
He was hurting all of the time
He got teased all of the time, but he would go and talk to the teachers and they would take care of that. But I know he was hurting all of the time in school.
Mother
Joining sports teams
I know he loves sports, but he could never join any normal teams. That was really sad. I wish he could have been like everybody else in sports. But he knows his limits. Physically, he is just not strong enough to handle it.
Mother
He wants to be a normal kid. It has affected us because he loves sports. He wants to be a normal kid. He doesn’t care if people stare at him and ask him questions, but he hates if they treat him any differently. He gets so angry. He hates that he can’t play on a regular team. That’s what affected us the most and it still does.
Mother
They let me play football!
My concern is that kids won’t play with him. For instance, I say to him, “What do you do at recess? Whom do you play with?” He said, “I just walk around and look at everybody.” I said, “Well, why don’t you play?” He responded, “The kids won’t let me play because they play tag and they are afraid I am going to fall. I watch the third graders play football.” He is fine with it but it hurts us more than him, obviously. One day, he came running out saying, “They let me play football!” I went up to their moms and I said, “Thank you.” They must think I am this crazy mother, but they say, “No, he is a cool kid.” That is what affected us the most honestly, the sports and how other people treat him. They think, ‘Oh, he can’t play, let’s not even ask him’.
Mother